Mercedes Plaza Fornieles1, Patricia García-Marcos Barbero2, Ana María Galera Miñarro3, Giorgio Barbieri4, Noemi Bellavia5, María Del Mar Bermúdez Cortés3, Álvaro Navarro Mingorance6. 1. Sección de Oncohematología Pediátrica, Hospital Clínico Universitario Virgen de la Arrixaca, Murcia, España. Electronic address: m.plaza.fornieles@gmail.com. 2. Sección de Neumología Pediátrica, Hospital Clínico Universitario Virgen de la Arrixaca, Murcia, España. 3. Sección de Oncohematología Pediátrica, Hospital Clínico Universitario Virgen de la Arrixaca, Murcia, España. 4. Sección de Radiología Intervencionista, Hospital General Universitario de Alicante, Alicante, España. 5. Departamento de Ciencias Quirúrgicas, Trasplante de Órganos y Tecnología Avanzadas, Hospital Universitario Policlínico-Vittorio Emanuele, Catania, Italia. 6. Sección de Cuidados Paliativos Pediátricos, Hospital Clínico Universitario Virgen de la Arrixaca, Murcia, España.
Abstract
INTRODUCTION: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and guide the development of end-of-life care in Paediatrics. METHOD: A retrospective observational study was conducted between June 2014 and June 2017 using a questionnaire, to assess the needs, experiences, and satisfaction with the care received, from a sample of parents who lost a child due to a foreseeable cause. Three different study groups were formed based on the team responsible for end-of-life care, and an analysis was carried out on the differences between the group treated by the paediatric palliative care team, the group attended by non-palliative paediatricians, and the neonatal group. RESULTS: Of the 80 eligible families, 64 could be contacted, and 28 (43.8%) finally completed the questionnaire. Our study shows positive experiences and high satisfaction of parents with the care received at the end of their child's life. The highest scores in experiences and satisfaction were given by the parents of the children served by the paediatric palliative care team, with statistically significant differences in family support, communication, shared decision making, and bereavement support (P<.05). CONCLUSIONS: Parents are satisfied with the care received at the end of their children's lives, but the intervention of a specific paediatric palliative care team improves the quality of care at the end of life in paediatrics.
INTRODUCTION: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and guide the development of end-of-life care in Paediatrics. METHOD: A retrospective observational study was conducted between June 2014 and June 2017 using a questionnaire, to assess the needs, experiences, and satisfaction with the care received, from a sample of parents who lost a child due to a foreseeable cause. Three different study groups were formed based on the team responsible for end-of-life care, and an analysis was carried out on the differences between the group treated by the paediatric palliative care team, the group attended by non-palliative paediatricians, and the neonatal group. RESULTS: Of the 80 eligible families, 64 could be contacted, and 28 (43.8%) finally completed the questionnaire. Our study shows positive experiences and high satisfaction of parents with the care received at the end of their child's life. The highest scores in experiences and satisfaction were given by the parents of the children served by the paediatric palliative care team, with statistically significant differences in family support, communication, shared decision making, and bereavement support (P<.05). CONCLUSIONS: Parents are satisfied with the care received at the end of their children's lives, but the intervention of a specific paediatric palliative care team improves the quality of care at the end of life in paediatrics.
Authors: Catriona R Mayland; Katy A Sunderland; Matthew Cooper; Paul Taylor; Philip A Powell; Lucy Zeigler; Vicki Cox; Constance Gilman; Nicola Turner; Kate Flemming; Lorna K Fraser Journal: Palliat Med Date: 2022-08-01 Impact factor: 5.713